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Informed and involved

The patient should be at the centre of decision-making and healthcare policy

Speaker addressing a crowdPatient involvement in decision-making is widely regarded as an important feature of good-quality healthcare. Policy-makers have been particularly concerned to ensure that patients are informed about and enabled to choose between relevant treatment options. What is not clear is how patients understand and actually value involvement.

There is wide variation across Europe – particularly from West to East. In the UK the patient is at the centre of policy making as shown by initiatives such as: 'Our health, our care, our say: a new direction for community services'.

Recently, individual budgets have been proposed for patients with long-term chronic conditions, such as mental illness and diabetes. This would give a greater treatment choice and allow patients to develop their own package of care, mixing clinical and alternative therapies to meet their needs.

Evidence from the US has shown that this can improve satisfaction, reduce the use of acute services and give value for money. There is a clear view in the US that the person who has the most at stake when it comes to healthcare decisions – the patient – should be involved in research, advocacy and all segments of the healthcare system.

However, that is easier said than done as demonstrated by the Picker Institute's analysis of trends from national patient surveys in England between 2002 and 2007. It revealed that there was almost no improvement to patient engagement in those five years, despite it being the supposed goal of increased NHS funding and policy reform over that period.

Specifically, the researchers found that communication needs are not always met and information about patients isn't shared with them. Many patients want more involvement, but find that shared decision-making isn't widely practised. They don't receive enough help with self-care and aren't actively encouraged to give their views.

Older patients
A 2007 study of patients aged over 70, across 11 European countries, showed that they want to be involved in their care. However their definition of involvement is more focused on the 'caring relationship', 'person-centred approach' and 'receiving information' than on 'active participation in decision- making'. Their desire for involvement is heterogeneous, making an individual approach to each person in this patient group  necessary in order to address their specific needs and requirements.

This study built on findings from a 2004 study of GPs in the same countries. Most GPs thought that involving older patients had positive outcomes, but saw this as a process taking place solely during consultations. The main barrier for GPs was lack of time.

For the patients their feelings of respect for doctors led to an unwillingness to question them, their lack of experience in being involved and possible mental and physical impairments were all barriers. Increasing older patients' involvement is not easy and will only be effective when GPs have adopted a more developed concept of what this entails and are supported with the different methods for achieving this.

Lithuanian study
The situation in some Eastern European countries is even less well developed. In a 2004 study, conducted in Lithuania, most polled women and men (84.6 per cent and 72.6 per cent) recognised health as a very important value in their life and as the most important among other social values. The overall mean of trust in healthcare system was 41.3 per cent, trust in doctors was 69.9 per cent, implementation of right to healthcare was 48.9 per cent, concern about healthcare was 96.5 per cent but patient impact in healthcare decisions was only 19.1 per cent.

Nearly half of respondents (47.4 per cent) preferred the informative GP-patient interaction model, which was realised in most cases (58.8 per cent). Partnership (shared decision-making) as an interaction model was expected by 37.2 per cent of respondents but only realised in every sixth case in primary care.

Younger and more educated Lithuanians trusted less in the healthcare system, but were more motivated to play an active role in healthcare decision-making. The informative model of doctor-patient was dominant and although 'partnership' was expected by patients it was not practised frequently.

Different expectations
Other studies have shown that patients' expectations of involvement in decisions about their care differed significantly from country to country. People in Spain and Poland exhibited a much greater preference for a paternalistic style than those in Switzerland and Germany. Those in Sweden, Slovenia, Italy and the UK occupied the middle ground. Nevertheless, dissatisfaction with the perceived opportunities for involvement in treatment decisions was also highest in Spain and Poland, suggesting that significant numbers of people in these countries are frustrated with the paternalistic approach, notwithstanding the prevailing culture.

Beyond the consultation
Current models and measures of patient involvement in treatment decision-making tend to focus on just two aspects of communication, the first being the  consultation. The second is the patient's use of information to consider the selection of one treatment option from a well-defined set. These narrowly-focused models and measures may obscure the relevance of patient involvement in some healthcare contexts. This limits investigations into the relationships between patient involvement in decision-making and healthcare outcomes.

Patients are involved because of what they say and do to influence a decision, but also by virtue of what they believe their roles, efforts and contributions to decision-making are, and their relationships with their clinicians.

A recent study among patients with diabetes showed they associated involvement in decision-making with a number of features. These included the the ethos and feel of healthcare encounters described as:
• welcoming
• respectful
• facilitative of patients' contributions
• non-judgemental

Communication about health problems was also a factor such as:
• practitioners attending to patients' views and patients feeling listened to
• practitioners giving clear explanations based on their professional knowledge and patients' understanding these communication about treatments
• practitioners explaining treatment rationales in ways that patients understand, and enabling patients to feel they have a say.

In practice this means that healthcare professionals who aspire to facilitate patient involvement in decision-making need to look beyond the way they discuss healthcare options with patients. They should also consider how they might enable patients to engage in the full range of decision-making activities and to develop a positive sense of involvement. It is also important to look at the way they discuss problems in consultations;  the provision of information about treatment options; and the scope patients have to influence decisions.

Patient-centred principles
The International Alliance of Patients' Organisations (IAPO) believes that patient-centred healthcare must be based on the following five principles:
1. Respect – patients and carers have a fundamental right to patient-centred healthcare that respects their unique needs, preferences and values, as well as their autonomy and independence.

2. Choice and empowerment - patients have a right and responsibility to participate as a partner, to their level of ability and preference, in making healthcare decisions. This requires a responsive health service to provide suitable choices in treatment and management options, which fit in with patients' needs. To achieve the best possible quality of life needs encouragement and support for patients, and carers. Patients' organisations must be empowered to lead and support patients, and their families, in exercising their right to make informed healthcare choices.

3. Patient involvement in health policy – to ensure that they are designed with the patient at the centre, patients and patients' organisations should be supported to share in all levels and at all points of healthcare policy-making. This should include social policy that will ultimately impact on patients' lives. See IAPO's Policy Statement

4. Access and support – patients must have access to the healthcare services warranted by their condition. This includes safe, quality and appropriate services, treatments, preventive care and health promotion activities. Provision should be made to ensure that all patients can access necessary services, regardless of their condition or socio-economic status. For patients to achieve the best possible quality of life, healthcare must support patients' emotional requirements, and consider non-health factors –  such as education, employment and family issues – which impact on their approach to healthcare choices and management.

5. Information – accurate, relevant and comprehensive information is essential to enable patients and carers to make informed decisions about treatment and living with their condition. Information must be presented in an appropriate format according to health literacy principles considering the individual's condition, language, age, understanding, abilities and culture.

Many of the healthcare delivery systems in Europe are struggling with all of this because of the fragmented and individual nature of healthcare. Responsiveness to patients is now seen as a key characteristic of effective systems but unfortunately, in many countries there is a long way to go.


The Author
Dr Paul Stuart-Kregor is a director at the MSI Consultancy
To comment on this article, email pme@pmlive.com

25th November 2008

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